ASD diagnosis - to pursue or not

[Myshoesarenew]

I’ve just come from the paediatrician with DS1 (5). The referral was made by his SLT some months ago in response to som difficult behaviour in sessions and also school pressuring me for general behaviour concerns. Nothing major.

Paed has referred him on to panel and ASD diagnosis and I’m really not sure how I feel. DH is angry with me (grief?) because he says he’s a normal little boy and I’m ruining his life. I think he is mostly a normal little boy but has some challenging behaviour. He’s wilful, dominant and has some problems interpreting his feelings. He’s by no means unmanageable but he is demanding and it can be tiresome. Paed thinks he has some social development problems but is incredibly high functioning. He is bright and doing well at school, and he is developing emotionally but less developed than his intellect.

I’m a bit shocked. I was expecting to be told he’s fine and to go away. I don’t know what to do - do we just go through this process? Are there disadvantages to a diagnosis? I kinda feel like he’s the same person regardless. What does a diagnosis get us? Will labelling him make it easier or harder? Do we tell anyone? Lots of questions. And I don’t know who to talk to or where to start.

He’s brilliant. He’s delightful. He’s funny and clever and sensitive. And he’s not that different to other children. Or is he? I don’t know...

Hi
School suggested DS1 may have Aspergers at about age 5 or 6 but DP was firmly in denial (not helped by MIL) so would not pursue diagnosis. Major issues at school at about age 8 led to a big meeting where they said you need to get a diagnosis so he gets support at secondary. He’s too clever to get help otherwise. Primary were happy to adjust routines etc but knew secondary would be different. We eventually got one at the end of Y5 (took 18 months). He’s now in Y7 and his first year at secondary has gone much better than expected with fantastic support from the school. He knows he has autism - we have him a few books , eg Dude I’m an Aspie, and school have also done a course with him on understanding his autism and how it affects him.

Jessie Hewitson’s book, How to raise a happy autistic child is very good.

My 9yo was diagnosed last year. He social and emotional stuff is the most prominent feature of his diagnosis. It was less noticeable when he was five (he too had a difficult birth and the Senco thought that might account for it, as did the paediatrics team, so we spent several years in a wait and see pattern) but as he got older the gap in emotional maturity between him and his peers widened considerably. It does now appear to be starting to close (a little!).

We say of his diagnosis (to him) that it is not a secret, but it is private and his to share if he wants to. I have explained that his teachers and doctors need to know and anyone who looks after him when I’m not there. However, I don’t generally explicitly share it outside those times. He however went back to school after the summer break this school year and told his whole table during ‘what I did in my holidays’ chat. We were pleased that he was able to share it.

I hope this helps a little. Good luck to you both.

Men especially can struggle with diagnosis of conditions like asd as there's no physical symptoms, h never really accepted dd had it until she had a complete mental health crisis in her teens. The diagnosis it's self is not overly useful when they are young but come the teen years it got us past the gatekeepers to access support services quickly from a specialist

You are still in a state of shock! poor you.
come on over to the special-needs board - you will be very very supported.

I had a totally different experience than you. I struggled, thought there was something wrong, but wasn't sure what it was. school denied everything and treated me awfully.

but I found the SN board very helpful and supportive. you will too.

You’re right - I am in shock. I hadn’t really thought about what I would feel like if he had a diagnosis (I know he doesn’t yet) but so many people (hcps and educators) have told me that he’s way too sociable and ‘high functioning’ (their language, not mine) for it to be that. The referral was a favour from SLT as school were being difficult about him not wanting to sit still in the autumn term.

But then he’s always been different. Maybe it’s always been there. He was a very angry baby, with such high needs. Never slept, always needed to be on me. He’s always seemed to be harder work than other kids. But I see other kids around who have more obvious/classic ‘signs’ - we don’t have that many meltdowns, we have destructive or aggressive behaviour (usually linked to something that happened at school and taking a long time to unpick). We have aggression, usually towards DC2, and always out of frustration when he’s reached his limit. We’ve been working on feelings with some progress.

And then I know exactly what he’s going through in that moment. I know the feeling of being nagged/hassled to the point that I’m about to explode. I’ve got better at dealing with it as an adult. I just hope we can help him

Quite a few men who struggle with sons being diagnosed would get the same diagnosis themselves nowadays. So they're thinking 'but he's just like me at that age - what do you mean there's something wrong with him?', along with 'I coped, why can't he?', not realising that schools are much noisier unpredictable places than in our youth and it's sensory battery every day.

My ds was diagnosed officially at the end of Y2 though the teacher that year was assuming the diagnosis anyway. Y3 and 4 were difficult but in Y5 he is thriving - teacher says he hasn't hidden under the table in months and is joining in with discussions, work, etc. The diagnosis means they know when he's not meaning to be cheeky but sounds it, and they take time to communicate differently.

Regarding DH I think we are ok about pursuing diagnosis at the moment. We are fortunate to be well connected and have a couple of ASD specialist educators in our circle. It’s easier for us than others to get a professional opinion off the record. They have reinforced what has been said upstream about access to support if/when needed. I expect in laws will be difficult (not British and from a culture that doesn’t view mental health in a good light - I know ASD isn’t a mental illness but will be in the same bracket for them). We are spending the weekend with them (at a very posh wedding ) so I don’t know if he will say anything.

Strangely SIL’s kid (3) shows many more ‘classic’ ASD signs: sensory issues (food, noise, groups, texture), hyperlexia and echolalia, and once did a poo in the middle of the floor with guests sitting around. It’s funny what you see in other kids but not yours, especially when it’s a PFB!

@jackparlabane - yes I work at a university in a STEM subject and DH is a professor. I am surrounded by (undiagnosed) ASD adults all the time... but beyond knowing that ASD isn’t a barrier to success I don’t know if that helps me yet

And I’ve been so self centred on this post but thank you for sharing stories of your wonderful DC with me - I have enjoyed reading about them. I hope their journeys continue to be as smooth as possible

DD was diagnosed aged 3 and I remember the shock and grief very well. She's 4 now and due to start reception in September, thanks to the early DX she had had extra sessions at school already and there is a plan for her transition with social story etc. Senco is excellent and I am now so happy that we had DD diagnosed early.

My DH is still in partial denial (our paediatrician said this is quite common...) But he does at least acknowledge that DD needs a bit of extra support.

OP, you can choose to go ahead with the assessment even if your DH is not 100% convinced. It is a lengthy process anyway and this might give him time to start to accept this.

I also happen to work with teenagers who are our of school for medical reasons, most of them have undiagnosed/late diagnosis/under assessment for ASD... The reason they are out of school is because they suffer with extreme anxiety due to not having had support in school. If they had been dxed earlier they may have had some support and/or an EHCP (although these are almost impossible to get in my LA). This might convince your DH?

@littleswede your point about anxiety is interesting. Just last week I was in the car with him and we were trying to park so I could drop something off quickly. Nowhere to park easily so I was driving round and he was getting so wound up. I had a chat with him about it not being his problem to solve or worry about. I don’t know if it helped him but it helped me understand him a bit

Hi, I would second getting Jessie Hewitson's book as a starting point. The most valuable support for me (DD13, diagnosed age 9) has been a FB group of autistic adults, called Embracing Autism. It is a group set up to educate NT (neurotypical) parents of autistic children. It is a 'political' space - a safe space for autistic adults - so if you join, please read all the pinned posts. The attitudes and values within that space are very different to the ones that we encounter in a neurotypical space, but it has shifted my understanding of my daughter's autism in a really significant way. The autistic community is awesome!

Thanks! We are away this weekend for a —very posh— wedding and visiting the in-laws. We are staying (thankfully) in a cottage in the middle of nowhere. Zero phone reception. It’s bliss!

Yesterday was interesting - a lot of challenging behaviour related to feelings I think. Nothing very very naughty, mostly things that are attention seeking, acting extra babyish. Nothing new either, but seemed more extreme to me. I suppose that’s just me looking at him differently though. Is this just how it will be from now on? That I spend time trying to modify the situation to assist his behaviour? Can I teach him to behave more appropriately for a social setting? I’m dreading the wedding. Though it could be amazing - if adults treat him like another adult and talk to him he will likely be fine.

We did talk to the ILs about it and FIL sobbed at the unfairness which seemed a bit extreme. I did have some helpful things to say which is all thanks to you!

I have learnt to pick and chose according to how well I think DS will cope. One trick for helping him in public is to give him a camera. It seems to help filter his anxiety and then he likes to revisit the photographs when recounting the day. As we don't live close to our families, I don't have any support, and it can be challenging so we live a quiet life. We are going to a wedding later this month but my parents are taking the children for us.

Good luck. The testing period can be draining, but we have all been there and happy to chat on PM any time.

He had a very difficult birth - forceps and intubation. We are not sure if h was starved of oxygen and it took 17 minutes to intubate him. I don’t know if that’s part of this or not.

Just my own opinion, not fact and with no medical qualifications - but yes, this could well be part of it. My DS1 was born 4 months early and had a brain bleed, intubation and eleventy billion other things going on just to save his life. He has various complex disabilities and his primary diagnosis is autism. All of his medical professionals (and there are a lot of them!) agree that his extreme prematurity is the reason behind his autism and other disabilities. For me it helps that there is "a reason", although I know others will feel differently.

In our situation it's completely impossible to keep DS's diagnosis private because it's so so so obvious and affects every area of DS's life....but you know what? He's bloody amazing, funny, learning in his own way to be sensitive and makes the world a much sunnier place.

It's great that your infant school is so supportive. Ours was inexcusably crap.

and and - I know it must feel like a tonne of bricks crashing down on you right now, but everything will be ok in time - there's a lot to get your head round and get used to.

Thanks both - really interesting insight. We are currently in hospital post tonsillectomy and he was such a superstar. But both my children were all but feral at the wedding this weekend. Other guests seemed to find them entertaining though which is something.

Is this just how it will be from now on? That I spend time trying to modify the situation to assist his behaviour?

I ask myself that question several times a week. The difficulty is never knowing whether he’ll find a particular situation difficult. This weekend we were out somewhere outdoorsy and unfamiliar and he found it very tricky to the point that we just took him somewhere else (thankfully there was a playground nearby).

But yes, the feeling that you always have to comfort them or placate them as you notice their mood dipping into a potential meltdown is a tiring one. To be honest, I’m so used to doing it, it barely registers. I used to think it was just him being a threenager and he’d grow out of it, but I know better now.

I am surrounded by (undiagnosed) ASD adults all the time...

so you can dx ASD in adults just by working with them when it usually takes a multidisciplinary team of experts and a few years to get a dx?

Well obviously I can’t, but it’s a field generally accepted to require highly analytical skills where aptitude for social communication is not required. Most of my colleagues are NT, but working with some of them is very much like parenting my own child where I will be constantly trying to smooth the way for our project. It was a flippant remark, but it still holds true that someone like my child would probably flourish in such an environment.